In the middle of November 2010, we found out we were expecting another baby. Baby #5 to be exact. Nonetheless, we were very excited. I personally couldn't wait for my ultrasound so I could find out if we were expecting another little boy (which we have 3 of) or finally another girl (which we only have 1). The pregnancy felt pretty normal to be. Of course you have the nausea, fatigue, and the occasional headache. By the time I hit 17 weeks and 6 days, it was time to go to Radiology. I was beyond happy to find out that in fact we were having another little girl. As soon as we left the hospital, I started calling everyone or texting them to let them in on the news. Everyone was so excited for us. And at this point, we decided to name her Sophia Emma.
Later that night, I get a call from my ob who says,"We need you to come back to MFM first thing tomorrow morning. They think they may have spotted some adnormality with the baby's head." I remember hanging up the phone and just breaking down. Some very close friends of ours told us to keep our head up, that maybe it was just a problem with the ultrasound equipment. First thing the next morning, I'm on my way to MFM. Scared out of my mind on what I was going to hear. But I tried to prepare myself for the worst possible scenario. Nothing came close to what they were going to say!
As I laid there on the bed, I admired my precious baby girl. She looked to be just another fine and healthy baby. I laid back smiling and watching her move all around. She just didn't want to sit still! She reminded me so much of all my other babies. I remember counting to see if all her fingers and toes were there. And in fact they were. I couldn't be any happier. The doctor excused himself and left the room. I didn't bother to think anything of it.
What seemed to be about 5 minutes later, the doctor walks back in the room and sits down, without saying a word. He looked at me with a very straight face and told me, "Our suspicions were right. We have come across an abnormality. And it is fairly rare." I tried to brace myself, and I replied with, "Ok, what would that be?" He says, "Your baby has Anencephaly." I never heard of such a condition before so my first response was, "Ok, what can we do to make this better." He takes a deep breath and says, "There is nothing we can do. Anencephaly is 100% fatal and has no cure."
I broke down immediately. Devistated isn't even the word to use. I tried to calm myself down as best as I could, so he could continue explaining exactly what the condition is. He went on to explain that it is a neural tube defect, almost like Spina Bifida. But in this case, the neural tube didn't close at the top, to form her skull. I was horrified. I really didn't know what this meant or how this could happen. And he explained that it was nothing that I did wrong, that these sort of things just spontaneously happen. After explaining, he went on to tell me I had 2 choices. That I could terminate my pregnancy, or I could continue to go on. And if I continue on, Sophia could pass away during delivery. Or she could live for a couple of minutes to a couple of hours. It seemed as if my biggest nightmare had come true. I never in my life wanted to have to bury one of my children. My children were to bury me!!
A social worker came into the room and had asked me if I'd like to have a recording of Sophia's heartbeat and that they could stick the recording into a teddy bear and I knew immediately that I wanted this. So they set up the ultrasound again and started to record her heartbeat, which was quite strong (157 to be exact). I just remember laying there thinking, "How can something be wrong with my precious angel when she seems to be just fine!?" I cried some more. And I just couldn't seem to get the tears under control. They told me they could get ahold of one of the genetic counselors, so I could talk to her before leaving. But I told them at that point, I just wanted to go home. What I really wanted to do was escape from this nightmare!
I came home and broke the news to my fiance. I don't think things sank in for him right away. But when it did, it hit him like a ton of bricks! My other children were heartbroken, as were we. It seemed like we were all just falling apart at the seams. At this moment, we decided to change her name from Sophia Emma, to Sophia Grace. It just seemed to fit so much better, now that we knew what was going on.
Here we are, 14 days after the diagnosis, and that pain is still very raw. I feel Sophia move, and I cherish her every movement. But at the same time, I feel this pain in my heart that I've never felt before. If all this was wrong with my baby, why is she still moving? But I've started to tell myself that she continues to move because she is my fighter. My precious baby sent from God. Everything I've ever wanted and had dreamed of having for so long.
At our follow up appointment, which was a 3D and 4D scan, the doctor went on to tell us that there were some other defects. I felt as if I couldn't bare to hear anything more. He started to tell me that Sophia also had a heart defect, which he really didn't get into. Next was that another doctor had pointed out that it looks as if she also has Iniencephaly, which is even more rare. And to top it all off, he also said there was an issue with her umbilical cord. That the umbilical cord is supposed to have 2 arteries and 1 vein. But she only has 1. He didn't say which one she had though. But their main concern is her Anencephaly.
This tears me apart as the days go on. But I've made a promise to Sophia that I will get more awareness out there to people who are trying to conceive. These things do happen. And it's heartbreaking. So as for my promise to her, I am spreading awareness on Anencephaly. I've started making Anencephaly Awareness Ribbons in her honor, and any money collected from making these will be put towards Sophia's 'final' costs. It all just seems so unfair. But I feel as if she has a right to have her legacy live on. After these short 20 weeks, Sophia has affected my life like noone else has. Even though she is not actually here yet, she has made me out to be a better person.
I have also contacted the March Of Dimes to get a walk started here in our local area in honor of this precious gift from God!
Awareness is key! And hopefully one day, doctors will be able to come up with a cure for this life-threatening illness. God knows I wish they could come up with a cure by tomorrow. But the chances of that happening are slim to none.
To those of you wondering if we're going to be continuing or terminating the pregnancy, the answer is, we are continuing the pregnancy.
At first, I had several people telling me that maybe I should just terminate. And I had thought long and hard about this. I started thinking that maybe these people were right. I actually went as far as setting up the appointment to have the procedure done. 2 days before the procedure was to be done, the doctor called me to tell me there was a problem with my insurance. Part of me felt guilty to have to continue a pregnancy with a very difficult outcome, but then another part of me felt very relieved. Even though I knew what was going to happen, I still wanted to carry Sophia full term. I want to take in all her movements and cherish them. I want to be able to hold her, hug her, kiss her, show her how much we truly love her, have her siblings and close family meet her. There is so much that I want to be able to do with her before having to say our goodbyes.
And to those of you thinking, "Wow, those people who wanted her to terminate are heartless!!". That is not the case at all. I've been told that this will be a high risk pregnancy, as all my other pregnancies have been. I delivered all my other children by C-section, as I will have to do with Sophia. And these people are just scared for my own well-being.
Please keep our family in your prayers as we start this journey with Sophia.
**Sophia was diagnosed with Anencephaly on February 23, 2011**